I never knew what scanxiety was until last year when Milo started treatment. When Oscar was diagnosed and ill, I naively (some might say optimistically) never thought we would have anything but positive results; he was having treatment and the treatment was 70-80% likely to save him (not from side effects and disabilities but at least from death) and of course I believed he was in that 70-80%. When Ian was ill we knew he would die and every scan was only a confirmation of the clinical signs of progression that was so obvious to all of us that were close to him.

With Milo it’s a bit different; every scan could go either way, we just don’t know how effective his treatment is being. And I also have in the back of my mind that we have yet to have just one scan in this family that is actually positive. There are in my mind so many options but biggest of them all of course is that the chemo isn’t working. Have the tumours decreased more, have the smaller ones gone so the surgeons may be able to remove the bigger one, have they all gone or are they just there the same as before or maybe even at this point have they grown bigger?

Well, we found out this month that the answer was; the tumours are still there, a lot smaller, but all of them still there. So chemo worked but unfortunately he has had the maximum dose of this type of chemo and can have no more. This is because having chemo isn’t just a medicine that helps, it can also bring on so much more; like he is now at higher risk of getting leukaemia after having had this chemo. He has lost hearing on both ears so has now got hearing aids.  And who knows what other delayed side effects may come. It’s a balance of risks we have had to weigh up to come to the decision to stop.

So right now, I have just been told Milo is on his way back from theatre. He has had another biopsy as we cling to hope that there may be a new marker on his tumour cells which means another treatment might work. We will have a four week wait for results where Milo continues a much needed but scary break from treatment as we see if the tumours stay stable or start growing without the treatment. If there are no markers we still throw some more chemo at him (a different type) and hope for the best.

I will now brace myself for my little man coming back after the anaesthetic  – no doubt he will want to know why I held him down as they gave him the magic sleep and I have a big telling off in waiting for that. I love it when he tells me off (not really always), it shows me he is still going strong!

Milo can be very moody and at times difficult to manage, but this could just be him being tired as chemo has ravaged his body by now and the few hours at school he manages are tiring him out. There is also the reality that we – doctors, nurses and I – are causing him trauma with all the treatment and he has to be able to let out his frustration over all these horrible things he keeps having to go through, that we put him through. It could also just be the fact that I have scanxiety and this manifests itself in me swinging from happily playing, baking and reading, to lying on the floor and telling the boys I am too tired and need to sleep. This is of course also highly conducive to the success of Seb and Lucas’ homeschooling(irony intended).

My body hurts in places I didn’t think possible and most of all my mind is telling me I can no longer cope. This, I must prevent from happening. So I tell myself I am fine and it’s ok to be tired but at the back of my mind I am terrified that I am cruising slowly at the moment towards a breakdown, knowing from having seen others how quickly the cruising can turn into a 100 mph neck breaking decline.

I can’t have a breakdown now.  I simply don’t have the time and I have no support for the boys if this happens. By this I mean, I am their mother and I am in my mind the only one that can do for them what they need (the expression making a rod for your own back does spring to mind – yes the stubbornness the boys exhibit did not come from strangers), and of course also not helped by lockdown.

And while there is never a ‘good’ time to have a breakdown (and I know that even trying to contemplate when exactly I might have the time to fit one in is not the right approach), I know that the constant worry about what the next results might bring is contributing a lot to how I feel at the moment.  It’s the uncertainty that unsettles everything around us and contributes to the rollercoaster of emotions as we approach another decision making day.  And of course it isn’t just me that’s impacted by it – the boys can sense my anxiety, my family and close friends want to be there to support me, but the reality is that there is no one in the world that can make sure the results come back the way I want them to.

So I continue with my research, come to the appointments armed with questions and alternative suggestions, and try and focus only on what I can control, which right now feels like not very much.